SAHMRI Registry Centre

Transcatheter Aortic Valve Implantation is an interventional procedure used for the treatment of aortic stenosis. Based at SAHMRI, the Transcatheter Aortic Valve Implantation Registry (TAVI-R) was established in 2018 as a clinical quality registry supported by the Australasian Cardiac Outcomes Registry (ACOR) Ltd. ACOR is an initiative of the Cardiac Society of Australia and New Zealand (CSANZ), which recognises the critical value of a national clinical cardiovascular quality registry incorporating quality, safety and appropriateness outcomes of patients undergoing aortic valve replacements via a transcatheter approach. A defined dataset is collected including patient characteristics, procedural techniques, device information and patient outcomes.

SAHMRI and ACOR work closely together to maintain and manage the registry of Transcatheter Aortic Valve Implantation procedures throughout Australia. With the support of TAVI performing hospitals, clinicians and device companies, data collected not only enables ongoing monitoring of the safety of the procedure and the devices used, but also promotes research opportunities to improve patient care.

All hospitals undertaking TAVI procedures are eligible to contribute data to the Registry. In order for a surgeon to be credentialed in Australia to perform TAVI procedures, please refer to the guidelines, ‘Position Statement for the Operator and Institutional Requirements for a Transcatheter Aortic Valve Implantation (TAVI) Program’ which are produced by CSANZ.

The Transcatheter Aortic Valve Implantation (TAVI) Registry aims to:

• Improve patient care and outcomes
• Educate clinicians and healthcare providers
• Identify areas of excellence and opportunities for improvement
• Ensure sites and clinicians meet the accreditation requirements to undertake TAVI procedures
• Provide an accurate and transparent assessment of the safety of the TAVI procedure and devices

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The Australasian Registry of Electrocardiograms in National Athletes (ARENA) collects and centralises cardiac screening data from across sporting organisations in Australia and New Zealand. It is led by researchers at the University of Sydney, in collaboration with other national and international experts, and based at the SAHMRI Registry Centre. ARENA was launched in 2023, initially in Australia, with New Zealand to follow as funding allows.

Sudden cardiac death (SCD) in athletes is a rare but tragic event. Cardiac screening of elite athletes for conditions associated with SCD is now widely recommended by leading bodies such as the Australasian College of Sport and Exercise Physicians. Screening generally includes a personal and family history and a physical examination, together with a resting 12-lead electrocardiogram (ECG).

However, while many Australian and New Zealand sports are screening athletes, data are not structured to be shared, meaning few comparisons exist across different sports. In addition, diverse ethnic groups and female athletes are under-represented in research that informs current guidelines.

ARENA is a registry that brings together athlete screening data and ECGs collected in Australasia. All elite sports conducting cardiac screening of athletes (including ECG) are eligible to provide data. ARENA works closely with participating sporting organisations, which are able to use this registry to improve the quality of their cardiac screening programs and provide better cardiac care for young athletes.

ARENA is funded by an Australian Government National Health and Medical Research Council (NHMRC) Investigator Grant and has ethical approval from the University of Sydney Human Research Ethics Committee (Project No. 2023/551). ARENA is endorsed by the Australasian College of Sport & Exercise Physicians (ACSEP) and Sports Medicine Australia (SMA).

ARENA aims to provide long-term national data to improve our understanding of:

• the role of various ethnicities (e.g. Indigenous Australians, Polynesian), age and sex in terms of accurate athlete ECG interpretation;
• the bounds of normal cardiac adaptations to exercise across athletes from different Australasian sports to provide relevant benchmarks for normal athlete ECG features and accurate interpretation; and
• outcomes of screened athletes.

For more information visit the ARENA website.

The Australia and New Zealand Vasculitis Quality and Disease Registry (ANZVASC-QDR) will commence in 2023. The registry has been designed and is being implemented to include all forms of vasculitis.

The initial focus will be on anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV). AAV comprises diseases associated with the presence of ANCA that cause inflammation of small blood vessels. The AAV are categorised as granulomatosis with polyangiitis (GPA), microscopic polyangiitis (MPA) and as eosinophilic granulomatosis with polyangiitis (EGPA). The ANZVASC-QDR will also focus on some forms of large vessel vasculitis (including giant cell arteritis).

Initially, five sites will be involved including two in South Australia, with more sites added after the initial phase. Multisite ethics and National Mutual Acceptance approval for the project has been obtained for Australia, with a separate approval for New Zealand. ANZVASC, via the ANZVASC Registry Committee and the Board, directs the registry with Monash University being the Data Custodian organisation.

The ANZVASC-QDR data set will include relevant demographic and social data, clinical data and investigations at diagnosis and enrolment, as well as routine clinical data from each annual review, as the results of annual routine investigations and other investigations that are obtained as part of routine care, as well as Patient Reported Outcomes (PRO) and Quality of Life (QOL) data. In some instances, data from other clinical reviews will be recorded.

The registry aims to:

• Provide Clinical Quality Data to participating units to improve care and outcomes for people with vasculitis
• Improve understanding of the quality of life of people with vasculitis and factors affecting these conditions
• Establish a resource to enable and support research on vasculitis in Australia and New Zealand
• Serve as a platform for registry linked clinical trials and surveillance of new therapies and practices.
• Improve training of those in specialties involved in the care of people with vasculitis.

The Australian and New Zealand Heart Transplant Registry (ANZHTR) is a newly established registry that will operate as part of the wider group of organ donation and transplantation registries within the ANZDATA group. Along with ANZLUNG these registries serve to fill the void left when the previous Australia and New Zealand Cardiothoracic Organ Transplant Registry ceased operations in 2018.

Led by an advisory committee comprising clinical specialists from all heart transplant units across Australia and New Zealand, with collaboration from consumer representatives, this registry aims to become a robust platform for recording and reporting on heart transplantation.

The Australian and New Zealand Lung Transplant Registry (ANZLUNG) is a newly established registry that will operate as part of the wider group of organ donation and transplantation registries within the ANZDATA group. Along with ANZHTR these registries serve to fill the void left when the previous Australia and New Zealand Cardiothoracic Organ Transplant Registry ceased operations in 2018.

Led by a steering committee comprising clinical specialists from all lung transplant units across Australia and New Zealand, with collaboration from consumer representatives, this registry aims to become a robust platform for recording and reporting on lung transplantation.

The prevalence of eating disorders in increasing in South Australia. Patients experience long waits for service during which time they develop medical complications requiring acute medical and multidisciplinary care only available in large tertiary hospitals. This care is complex, prolonged and challenging for patients and the care team. There is a lack of information and understanding about this patient group and the care they receive. This correlates with a lack of evidence-based protocols describing best practice care and studies to deepen understanding and improve care.

A state-wide registry will provide vital information on this group of patients: data set for clinical research, quality improvement and more efficient, effective care.

Click here to read more about our research

Click here to view a case study on CADOSA published by the International Consortium for Health Outcomes Measurement (ICHOM)

The Australian POTS Patient Registry is a prospective, investigator-led registry designed to improve understanding of postural orthostatic tachycardia syndrome (POTS)—a complex autonomic disorder characterised by excessive heart rate elevation upon standing, often resulting in debilitating symptoms and significantly reduced quality of life.

POTS predominantly affects young women, with an estimated 80% of cases occurring in females. The condition has gained increased attention due to its rising prevalence, particularly following COVID-19 infections, as emerging evidence suggests that viral triggers, including SARS-CoV-2, can contribute to autonomic dysfunction.

Currently, the registry is limited to patients diagnosed with POTS at a specialist clinic in South Australia and represents the largest adult POTS registry globally and the only one in Australia. It collects comprehensive clinical data and patient-reported outcome measures (PROMs) at baseline and longitudinally, assessing symptom burden, quality of life, and diagnostic pathways. Additionally, it captures clinical assessment data, including autonomic testing, imaging, and other diagnostic investigations, to provide a more detailed understanding of disease presentation and progression.

The registry fills a critical gap created by the absence of an ICD code for POTS in Australia and the lack of adequate patient tracking, ensuring real-world data is systematically recorded. This information is essential for advancing research, improving clinical care, and informing policy development. The registry is actively working towards national expansion, with the goal of enhancing data collection and improving healthcare outcomes for individuals with POTS.

The Australian POTS Foundation

The Australian POTS Foundation supports research, advocacy, and patient care for postural orthostatic tachycardia syndrome (POTS) and has partnered with researchers from the University of Adelaide and SAHMRI to support the Australian POTS Patient Registry. By supporting the registry, the Foundation is driving research, improving clinical care, and shaping policy to enhance patient outcomes.

For more information, visit the Australian POTS Foundation website.